NUFFIELD TRUST – WRITTEN EVIDENCE (ASC0104)

The Nuffield Trust is an independent health think tank. We aim to improve the quality of health care in the UK by providing evidence-based research and policy analysis and informing and generating debate. Adult social care has been an important priority for our research for several years.

We believe that the current state of the sector is letting down people who need support across England. The lack of priority and attention given to it by successive Governments and in wider public discourse has allowed failures to persist which would not be tolerated in healthcare. We very much welcome the Committee’s inquiry. This submission addresses in turn the questions where we hope we might be most helpful – some, rightly, are for users of social care to answer. We lay out in detail how a lack of visibility and commitment has played out for different groups and areas, how this interrelates to the sector’s many problems, and some specific options for change.

Key points

• A lack of visibility and priority have had serious impacts for social care. It has faced prolonged funding cuts and a worsening staffing crisis, undermining Government aspirations for it to provide more and better support. During the covid-19 pandemic, low priority for social care contributed to the disruption and mortality seen in the sector.
• Unpaid carers looking after their family and friends are particularly often overlooked. They play an essential role without which formal adult social care would collapse, yet the number of carers getting direct support has dopped by 13,000 since 2015/16. The provision of respite care has also been falling in recent years.
• Addressing the invisibility of social care will require greater political leadership; better data to allow the sector to be monitored and understood; and more engagement from NHS bodies in important local decisions.
• Navigating and understanding the social care system in England is difficult. Other countries have invested in ways to empower people who need and use care, both in decisions about their care and at a national level.

1. One of the fundamental challenges facing adult social care is that it is ‘invisible’. Do you agree? What do you think explains this? 

Covid-19 highlighted that adult social care had low priority and visibility within central government and low awareness among the public. This is one of the fundamental problems driving short-term and long-term failings, including avoidable deaths and widespread disruption during the pandemic.

In the years before covid-19, social care was increasingly deprioritised in the government. The DHSC social care team had been reduced in number. There had been no director general dedicated to social care since 2016.[1]

Low public awareness of social care is one factor that explains this lack of priority. With almost half of the public believing social care is funded by the NHS[2], reform has become seen as politically difficult and bogged down in delays and half-measures.[3]

A further issue, again highlighted by covid, is that accountability for social care is often unclear. Responsibility for public funding and administration of the system is split between national and local governments and powers over policy are spread across DHSC, DLUHC and DWP. There is no single visible point of leadership and accountability comparable to NHS England.

The actual delivery of care, meanwhile, happens through a vast and complex sector spanning family, state and community. There are over 15,000 different regulated providers (plus many more unregulated) of all types and sizes.[4] There remains a lack of reliable and accessible data[5] on who provides both paid and unpaid care, and who draws on it.

2. What are the key changes that need to be made to reduce the invisibility of adult social care? 

More comprehensive, high quality data must be collected and made available. Until there is a good grasp on who is drawing on care, who is delivering care and support and where there is unmet need, it will continue to be difficult for the media, politicians, and campaigning organisations to draw more attention to the issues facing the sector.

Newly emerging integrated care systems have an opportunity to raise the visibility of care locally by ensuring that social care representatives are equal partners in important decisions.

Efforts to raise social care’s priority within government are evident in the appointment of a social care specific Director General in June 2020 and a Chief Nurse for Social Care in late 2020. Capacity in the DHSC social care team has also been bolstered significantly.[6] However, there is still no Chief Care Worker despite care workers making up the majority of the social care workforce.[7] The progress made needs to be sustained and embedded.

National political leaders ultimately determine the long-term funding of adult social care and the perceived value of its workforce. A workforce strategy that seeks to address low pay, unstable contracts, lack of progression and training is urgently needed to make social care a more attractive career option. A stable, reliable adult social care sector with a respected workforce may be more likely to be valued and supported by the public.

3. How does this invisibility reflect the experience of social care for people who draw on care and support and their carers? 

This question will be best answered by carers and those receiving care. However, our research does suggest that the consequences of social care’s invisibility during the pandemic were stark. With no senior social care voices involved in key decisions during the early months, guidance around infection control, testing and discharge failed to take into account the complexity and fragile state of the sector.[8]

This had a tangible effect on the experiences and the outcomes of people across the sector with prolonged isolation, and at different points during the pandemic a lack of PPE, serious workforce shortages, and limited access to tests.

Social care is vast and complex and there are groups and areas that are particularly invisible. Throughout the pandemic, there has been an underlying assumption in much of the guidance and political narrative that social care consists means care homes for older people. In reality, most care is delivered in people’s own homes. Around half of local authority social care spending is on people aged 18 – 64.[9]

4. How would you define the purpose of adult social care? How does the invisibility of adult social care get in the way of achieving this purpose?   

Social Care Future state that the purpose of social care is to enable people to live in the place they call home, with the people and things they love, in communities which look out for one another.[10] This is echoed by others, for example in the ‘dementia statements’ produced by the Alzheimer’s Society – which include the right to contribute to society, to continue with day-to-day and family life, to be accepted and included in communities, and not live in isolation or loneliness.[11]

This is broadly consistent with the vision set out in the government’s social care white paper and the earlier Care Act. But there is a sharp disconnect between these aspirations and what is likely to be a reality of underfunding, understaffing, and steep charges for those who need support. The lack of visibility of social care as a sector put it first in line for deep cuts during the period of austerity, and allowed and encouraged political leaders to settle for partial and minimal solutions.

5. To what extent does the definition of the purpose of adult social care differ for younger and for older adults? How can future reform of the adult social care system best address these differences? 

The purpose of adult social care - enabling people to live fulfilling lives - should be the same for all adults regardless of age.

However, the needs of younger and older adults differ and it is important that future reform encourages flexible, personalised care. Direct payments are one mechanisms through which to deliver flexibility but uptake remains low: 32.4% among working aged adults and only 9.7% among older adults.[12]

Future reform should also take into account the fact that younger disabled adults typically do not have the housing wealth and savings that many older adults have accumulated over their working lives. Although younger adults generally qualify for some public funding, they still have to contribute to care costs from their income.

The new £86,000 lifetime cap on care costs (which excludes funding contributed by local authorities) will not take into the account the level of wealth a person starts with. This means that for people with the same level of need for care, those with fewer assets are likely to take a very long time to reach the cap and will deplete a much greater proportion of their wealth than someone who began their care journey with higher assets.[13]

6. What are the key challenges that people who draw on care and support and carers will face in the future, which are not factored into current assumptions related to the social care system, for example the fact that some families will age without children to care for them? How are these challenges different for younger and for older adults who draw on care? What should be done now to address them? 

Demographic and generational change will change the make-up of those who need care, requiring different approaches.

There is a continuing trend towards more people living longer with multiple long-term conditions. This is likely to lead to growth in demand for social care services, delivered by a professional workforce trained to provide more specialist care. Our system in practice relies heavily on an assumption that unpaid carers can continue to provide a huge proportion of the support people need, but it is likely they will need more advanced skills and training, for example in person-centred dementia care.

At the same time, homeownership is declining steadily in the UK.[14] The cap on care costs will become more expensive to the state if future cohorts do not have assets to deplete before public funds are available. Less ability to draw on housing wealth would also increasingly mean taking money from the incomes that care users live on, rather than assets that they own.

There has been a growing trend towards home care over residential care in recent years. This needs to be taken into account by councils and providers choosing where to commission and invest.[15]

7. How can other public services (such as the NHS) play their part in tackling the invisibility of adult social care? 

There is a clear role for the NHS, integrated care systems, GPs and schools to play using their visibility and popularity, and the resources it brings, to support social care. Newly emerging Integrated Care Systems have an opportunity to work in genuine partnership with the social care sector to help bolster its capacity, help train the workforce and stabilise providers. It will be important that any new initiatives by the NHS – for example running homecare services as has happened recently in one area[16] – are implemented in partnership with the social care sector so as to ensure health and social care services run seamlessly. [17]Our research during the pandemic underlined the need for these new ICSs to engage social care providers and commissioners in local decision-making and processes. Our research suggests that more needs to be done to ensure that carers’ assessments, which are crucial for arranging the right help when recovering patients leave hospital, happen in a timely way: there must be more consultation with carers, as is required in the new Health and Care Act.

8. What effect has the COVID-19 pandemic had on adult social care? 

The response to Covid-19 in social care has been widely criticised as being too slow and insufficiently coordinated in the early months[18]. Tragically, many people who draw on and provide care have died from Covid-19. The impact in care homes has been particularly stark: between mid-March and mid-June 2020, deaths in care home were responsible for 40% of all Covid-19-related deaths[19], and there had been 43,871 deaths recorded in care homes attributed to Covid-19 by February 2022[20]. People also experienced generally worsened wellbeing and support. Isolation policies throughout lockdown have raised questions about the balance of rights.

In the early months of the pandemic especially, many social care and respite services were stopped, and many people who draw on care, and their carers, have struggled to access health services. Services are now reporting more people presenting with complex needs and increased rates of deterioration.[21] Unpaid carers have lost an estimated 25 hours of support each month over the pandemic, and 69% of surveyed carers have reported that their mental wellbeing has worsened as a result.[22]

Experiences of, and impact on, people who draw on care and live at home remain mostly invisible. The impact of the Covid-19 crisis has also been felt unequally. The proportion of deaths in adult social care services has been higher among Black (49%) backgrounds, compared to White backgrounds (41%).[23] People with learning disabilities are estimated to be more than three times more likely to die of Covid-19 than the general population.[24] 

The pandemic accelerated severe problems in the recruitment and retention of staff. Staff have made significant sacrifices throughout the pandemic, dealing with the emotional cost of losing people in their care[25], and the financial cost of losing pay when needing to isolate for sickness. They are now facing high levels of burnout and the option of better pay and working conditions elsewhere.[26] Our own analysis highlights the adult social care workforce shrank alarmingly by around 3% in the 6 months leading up to October 2021, with up to 70,000 staff leaving.[27]

The financial stability of councils and providers has also been affected. The additional costs of procuring PPE, ongoing staff sickness, managing isolation, and rising insurance premia have worsened already precarious provider finances. At the same time, occupancy rates in care homes, dropped during the height of the pandemic. The current rising cost of fuel and energy, and the health and social care levy, could push more providers over the edge. The Infection, Prevention and Control social care fund helped to stabilise some, but ended in March 2022[28]. Recent surveys have highlighted that providers are shutting their doors or have insufficient capacity to respond to demand[29]. This is degrading the ability of councils to arrange care, with waiting lists for care, assessment and review over 500,000 in Spring 2022[30].

9. Unpaid carers: invisibility and unsustainable pressures

There are between 7 and 13 million unpaid carers in the UK[31],[32]. They provided care worth £193 billion[33] per year during the pandemic, and a chronically underfunded and understaffed system constantly asks more of them.  Yet in 2020/21 only 388,730 received a carers assessment in England (Nuffield Trust analysis of SALT data). The number receiving direct support - payments, personal budgets, or support commissioned by councils - dropped by 13,000 between 2015 and 2021. Of the 800,000 young carers aged between 5 and 17[34], almost two-thirds (64%) receive no support, whether formal or informal.[35]

As we will detail in an upcoming Nuffield Trust report on unpaid carers, there has been a significant erosion of support in recent years.  Analysis of SALT data[36] by the Nuffield Trust shows an 11% drop  (19,000) in carers receiving respite care (coded in SALT data as ‘support involving cared for person’) compared to five years ago. Trends towards less support and choice, and fewer breaks, go against the grain of what carers say is important for their wellbeing and resilience.

The consequences of failing to value and respect unpaid carers are enormous, both to carers themselves and society.  The 1.3 million people who provided more than 50 hours a week of unpaid care during the pandemic face an impact on their health equivalent to the loss of 18 days[37] in full health for every year spent caring. 

There is also a wider cost in lost tax and productive paid work. Despite some notable initiatives to better support working carers, many carers continue to struggle combining paid work and caring responsibilities and find that carers assessments do not adequately take this into account, with more than one in three (38%) giving up work a result[38].  A key part of the problem is a lack of access to flexible respite care.

10.                    Effective action to support unpaid carers

Newly formed Integrated Care Systems must seize the opportunity to better identify and include carers as they plan care for their populations and arrange hospital, GP, and community nursing care.

It would be helpful to require all integrated care boards to develop a ‘plan on a page’ including actions to identify and support carers, with clearly defined indicators of success.  Examples could include expanded provision of “carer passport” records to help ensure recognition and support for carers in hospitals, other services and the workplace; and delivery of training, support and equipment for carers where they are being asked to provide basic nursing or clinical care like dressing wounds and monitoring for infections.

As a group for whom there is clear evidence of poorer health outcomes, ICSs should include carers in health inequalities impact assessments as part of standard good practice.

Examples of actions by local and national government to tackle poor health outcomes among carers and help them to continue working could include entitlements to flexible ‘carer friendly’ appointments, and flexible government-funded respite care to allow them to attend their own health care appointments.

Finally, we need to make unpaid carers much more visible in wider policy decisions.  Despite legislative change to provide parity of esteem for carers (Care Act 2014[39]), their needs are still not always considered. One recent example of this is the policy of ‘discharge to assess’. This had clear benefits to the NHS in supporting the process of discharge from hospital and reducing hospital length of stays[40]. But there is growing evidence of cases in which assessments of carers’ ability to take on extra caring duties have not been undertaken[41] resulting in difficult situations for people who draw on and offer care and support.

11.                    Putting co-production at the heart of care

Both the 2014 Care Act and the government’s recent white paper on adult social care set out ambitions for co-production to ensure that “the voices of those who draw on care and support are involved in the ongoing design and implementation of social care reform”[42]. This is a laudable ambition. Mechanisms should be put in place to make it a reality.

Other countries provide examples of structures and initiatives which have sought to enable the public to have a say in how services and systems develop. Scotland, for example, has a People-Led Policy Panel at a national level, made up of 50 diverse members including unpaid carers, of which 18 meet on a more regular level.[43] This has been working with the Scottish government since 2018 in the construction of a shared vision for adult social care.[44] It is funded by the Scottish government and is designed to work as an equal partner in social care policy.[45] Although no formal evaluation has been undertaken, its contributions have been used to inform ongoing reform plans[46] and we understand their input and research have fed into the Covid-19 response.[47]

Other countries do more to support individuals in navigating the system, which can be very difficult, and making decisions about their care. In Japan, every person eligible for care is assigned a care manager who helps put together a care package and regularly reviews it.

In Germany, local advice centres have been operating for some time although there is concern over local variation. In France, similarly, centres are being established which act as a single-entry point to advice on people’s rights, support in arranging care[48], as well as signposting unpaid carers to These support centres are mandated nationally to aid consistency but managed . A performance ‘barometer’ is being developed to improve transparency and accountability [49]

27 May 2022